21 March 2018

I would like to speak in the Senate tonight about Cyclone Marcus, which impacted on the cities of Darwin and Palmerston and rural areas on Saturday. I just want to point out to the Senate the importance of the Territory spirit. It has been terrific to see, certainly through media reports and from people who I've spoken to. We've been here in the Senate, obviously, as of Monday. In the clean-up on Sunday, Monday and Tuesday, the coming together of people in the Northern Territory has been wonderful to see. We certainly heard about the spirit of community in coming together after the bushfires. The same is happening in our capital in the Northern Territory.

I make reference, too, to my colleague the member for Solomon, Luke Gosling, who certainly has been out and about with constituents. Many of the community are giving generously of food to those who are hungry, helping those who have had to boil water for a couple of days because of concerns of contamination. We now know those concerns were unfounded and the water is fine.

For those people in Darwin who are watching, I just want to read through some of the latest notices that are coming through from the Northern Territory Police, Fire and Emergency Services through the office of the Chief Minister, Michael Gunner. The Chief Minister has said that financial relief payments have been activated to help people affected with their immediate emergency needs. The cyclone was quite powerful. It was a category 2 cyclone that had a major impact on Darwin, Palmerston and rural areas, with hundreds, if not thousands, of trees and powerlines down across the city. Thankfully, there have been no major injuries.

Winds in excess of 130 kilometres per hour have done significant damage, causing widespread power outages to around 30,000 households as of Saturday, and 2,400 households are still without power.

Today Northern Territory Chief Minister Michael Gunner said the immediate relief payment of $250 is available for families who've been without power for over 72 hours. The relief payment is to assist with the costs associated with being without power, and people can apply now from five relief centres. Residents may go there and seek that support. For further assistance, people are welcome to call the Territory Families number, which is (08)89992908.

I would like to turn to an important event that also happened in the last few weeksthat is, the 10th anniversary of the MJD Foundation. What is MJD? It is Machado-Joseph disease.

It's a hereditary neurodegenerative condition, and the damage that it causes to the cerebellum and brain stem initially causes muscular weakness and progresses over time to a total lack of voluntary control. It causes very significant permanent physical disability.

It does impact largely, unfortunately, just in one pocket area. The spread of MJD is in Arnhem Land. In relation to the history of the disease, according to the foundation and other sources, it has been attributed to the 16th century trading and exploration activities of Portuguese sailors.

Entry into the Australian population was thought to have been through trading relationships between the Aboriginal people of Arnhem Land and the Macassan people of Indonesia, who in turn traded with the Portuguese.

However, in February 2012, research was published which effectively rules out the Portuguese linkthat is what it initially wasand instead points to a direct Asian link based on international DNA. This means that the type of MJD experienced in northern Australia is most like the Asian variant of the disease, and this is known to favour an aggressive anticipation effect. The MJD Foundation knows therefore that more people will develop the disease earlier than their parents in this current population.

The families who are impacted are largely on Groote Eylandt in the communities of Angurugu and Umbakumba, Bickerton Island, Galiwinku mainland, Yirrkala, Numbulwar, Ngukurr, Oenpelli and certainly some areas of the Darwin mainland.

In Central Australia,there are affected families in Papunya, Hermannsburg and Santa Teresa. There are also some families who have MJD in mainland Queensland around Cairns, Kuranda and Atherton. So why does the MJD Foundation focus on Aboriginal Australians? Largely because, in the Northern Territory, Aboriginal Australians have a prevalence of this disease 100 times greater than the international average, and many Aboriginal Australians with MJD also live in remote communities. Therefore, there are significant gaps in services compared with those available in non-remote settings. So this foundation is incredibly important.

I just wanted to read to the Senate the story of one amazing womanand there are just so many amazing women in the Northern Territory. Gayangwa is an Anindilyakwa woman of Groote Eylandt, and she's 73 years old. Machado-Joseph disease has been a part of her life for as long as she can remember. Her father developed the disease when he was an older man, and all of her six brothers and sisters were affected by the disease in their 40s. She was the primary career for two of her sister's children for over 15 years, and now the third generation of her family is sick. Her 21-year-old niece passed away in 2014. She has nieces, nephews and grandchildren with Machado-Joseph disease. That's just one story of one amazing person.

I remember when I became the member for Arnhem in 2005 and I travelled to Groote Eylandt. I had heard of Machado-Joseph disease, but it wasn't until I started doorknocking around Alyangula and then the communities of Angurugu and Umbakumba that I observed some young people with this incredible disease. It has a profound impact. You are just quite stunned. Not only was it just one person; it was so many families. I remember at the time asking: 'How is it that this disease is here?' That was when I was informed that it is a hereditary disease. It is largely in certain clan groups, and it does pass on. But the fear of course now is that it's passing on a lot sooner to the next generation.

As you heard in the story there, some of the younger ones are now getting it way too soon, whereas in decades past it was the older generation. So now we have young people who are suffering from the disease, and many of them need to go to Darwin to get care. I want to congratulate all those who work with the MJD Foundation on the incredible work that you do for the families of the Northern Territory and across to Queensland, firstly to find a cure for this disease and also to give support to those families who know that really it is a life sentence.

They know that they don't have too long, and they've got to find ways to make their life as comfortable as they can in these remote regions. So congratulations for the work you do. Thank you for the work you do, and keep going.

You can watch my speech here:https://youtu.be/mpz6jtU8DlQ



Authorised by Noah Carroll ALP Canberra